Received: 8 February 2016
Revised: 7 March 2017
Accepted: 9 March 2017
DOI: 10.1002/pon.4421
PAPER
Levels of unmet needs and distress amongst adolescents and young adults (AYAs) impacted by familial cancer P. Patterson1,2 1
|
F.E.J. McDonald1,2
CanTeen Australia, Sydney, NSW, Australia
2
Cancer Nursing Research Unit, Sydney Nursing School, University of Sydney, Sydney, NSW, Australia
|
K.J. White2
|
A. Walczak1
|
P.N. Butow3
Abstract Objective:
To describe levels of, and relationships between, distress and psychosocial unmet
needs in adolescents and young adults (AYAs) with a family member with cancer.
3
Psycho‐Oncology Cooperative Research Group (PoCoG), University of Sydney, Sydney, NSW, Australia Correspondence Pandora Patterson, CanTeen Australia, GPO Box 3821, Sydney, NSW 2001, Australia. Email: [email protected]
Methods:
Adolescents and young adults (12‐24 years old) with a living sibling or parent with
cancer participated. Participants completed demographics, the Kessler 10 (K10) distress scale and the Sibling or Offspring Cancer Needs Instruments. Descriptive statistics were obtained for all measures, item‐level frequencies were examined to identify common unmet needs, and relationships between distress and unmet needs were explored.
Results:
Average sibling (N = 106) and offspring (N = 256) distress levels were in the high
range (K10total = 22‐30), with 29.6% and 31.6% in the very high range (K10total = 31‐50), respectively. Siblings had mean = 19.7 unmet needs (range 0‐45), 66% had ≥10 unmet needs, and 44% of the 45 needs were unmet on average. Offspring had mean = 22.4 unmet needs (range 0‐47), 77% had ≥10 unmet needs, and 48% of the 47 needs were unmet on average. Strong positive correlations were found between K10 distress and the number of sibling/offspring unmet needs (r = 0.599 and r = 0.522, respectively, P = .00).
Conclusions:
Australian AYA siblings and offspring impacted by familial cancer experience
high levels and numbers of unmet needs and substantial distress. Strong associations were found between increased distress and more unmet needs. Distress levels were comparable to AYAs seeking treatment for mental health issues. Insights into the type and number of needs experienced by AYA siblings and offspring will facilitate development and delivery of targeted, age‐appropriate interventions, and resources for these vulnerable and underserved young people. KEY W ORDS
cancer, distress, offspring, sibling, unmet needs
1
|
B A CKG R O U N D
cancer every year, and another 1000 have a sibling diagnosed with cancer,10-13 research in this area is critically important.
Cancer‐related distress and unmet needs have been explored to
Mental health problems constitute approximately 50% of disease
varying degrees in adult and paediatric patient, caregiver, and family
burden for AYAs in the general population,10 and they have the
populations.1-3 More recently, this has extended to adolescents and
highest incidence of mental illness of any age group.14 The added
4-9
young adults* (AYAs) impacted by familial cancer.
Given that
burden of familial cancer can severely challenge AYAs' developing
approximately 21 000 Australian AYAs have a parent diagnosed with
coping skills, and many siblings and offspring experience distress,
--------------------------------------------------------------------------------------------------------------------------------
This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made. © 2017 The Authors. Psycho‐Oncology Published by John Wiley & Sons Ltd.
Psycho‐Oncology. 2017;26:1285–1292.
wileyonlinelibrary.com/journal/pon
1285
1286
PATTERSON
ET AL.
behavioural issues, and unmet needs.8,9,15-19 Needs reported for
(3) postal invitations to siblings of patient members of CanTeen (who
siblings and offspring of cancer patients include open, honest commu-
were not members themselves). This enabled contact with a diverse
nication, information about the cancer, help coping with emotions,
sample of young people.
understanding from friends, support from other young people with
Ethical clearance was obtained through CanTeen and hospitals
similar experiences, and support to maintain their interests and
involved in the study (HREC/09/RPAH/29, HREC/09/CIPHS/24).
activities.4,6,20
Parental consent was sought for participants 80% of siblings and almost all offspring members had joined
Revised: 7 March 2017
Accepted: 9 March 2017
DOI: 10.1002/pon.4421
PAPER
Levels of unmet needs and distress amongst adolescents and young adults (AYAs) impacted by familial cancer P. Patterson1,2 1
|
F.E.J. McDonald1,2
CanTeen Australia, Sydney, NSW, Australia
2
Cancer Nursing Research Unit, Sydney Nursing School, University of Sydney, Sydney, NSW, Australia
|
K.J. White2
|
A. Walczak1
|
P.N. Butow3
Abstract Objective:
To describe levels of, and relationships between, distress and psychosocial unmet
needs in adolescents and young adults (AYAs) with a family member with cancer.
3
Psycho‐Oncology Cooperative Research Group (PoCoG), University of Sydney, Sydney, NSW, Australia Correspondence Pandora Patterson, CanTeen Australia, GPO Box 3821, Sydney, NSW 2001, Australia. Email: [email protected]
Methods:
Adolescents and young adults (12‐24 years old) with a living sibling or parent with
cancer participated. Participants completed demographics, the Kessler 10 (K10) distress scale and the Sibling or Offspring Cancer Needs Instruments. Descriptive statistics were obtained for all measures, item‐level frequencies were examined to identify common unmet needs, and relationships between distress and unmet needs were explored.
Results:
Average sibling (N = 106) and offspring (N = 256) distress levels were in the high
range (K10total = 22‐30), with 29.6% and 31.6% in the very high range (K10total = 31‐50), respectively. Siblings had mean = 19.7 unmet needs (range 0‐45), 66% had ≥10 unmet needs, and 44% of the 45 needs were unmet on average. Offspring had mean = 22.4 unmet needs (range 0‐47), 77% had ≥10 unmet needs, and 48% of the 47 needs were unmet on average. Strong positive correlations were found between K10 distress and the number of sibling/offspring unmet needs (r = 0.599 and r = 0.522, respectively, P = .00).
Conclusions:
Australian AYA siblings and offspring impacted by familial cancer experience
high levels and numbers of unmet needs and substantial distress. Strong associations were found between increased distress and more unmet needs. Distress levels were comparable to AYAs seeking treatment for mental health issues. Insights into the type and number of needs experienced by AYA siblings and offspring will facilitate development and delivery of targeted, age‐appropriate interventions, and resources for these vulnerable and underserved young people. KEY W ORDS
cancer, distress, offspring, sibling, unmet needs
1
|
B A CKG R O U N D
cancer every year, and another 1000 have a sibling diagnosed with cancer,10-13 research in this area is critically important.
Cancer‐related distress and unmet needs have been explored to
Mental health problems constitute approximately 50% of disease
varying degrees in adult and paediatric patient, caregiver, and family
burden for AYAs in the general population,10 and they have the
populations.1-3 More recently, this has extended to adolescents and
highest incidence of mental illness of any age group.14 The added
4-9
young adults* (AYAs) impacted by familial cancer.
Given that
burden of familial cancer can severely challenge AYAs' developing
approximately 21 000 Australian AYAs have a parent diagnosed with
coping skills, and many siblings and offspring experience distress,
--------------------------------------------------------------------------------------------------------------------------------
This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made. © 2017 The Authors. Psycho‐Oncology Published by John Wiley & Sons Ltd.
Psycho‐Oncology. 2017;26:1285–1292.
wileyonlinelibrary.com/journal/pon
1285
1286
PATTERSON
ET AL.
behavioural issues, and unmet needs.8,9,15-19 Needs reported for
(3) postal invitations to siblings of patient members of CanTeen (who
siblings and offspring of cancer patients include open, honest commu-
were not members themselves). This enabled contact with a diverse
nication, information about the cancer, help coping with emotions,
sample of young people.
understanding from friends, support from other young people with
Ethical clearance was obtained through CanTeen and hospitals
similar experiences, and support to maintain their interests and
involved in the study (HREC/09/RPAH/29, HREC/09/CIPHS/24).
activities.4,6,20
Parental consent was sought for participants 80% of siblings and almost all offspring members had joined
